Are there any updates on COVID-19 “long-haulers”?

Clinical Symptoms

A: Yes and no. Unfortunately, we still don’t know enough about how many people might fall into this group and the best ways to help them.

However, these challenging long-term cases of COVID-19 are getting more national attention, with renewed focus on helping these patients!

You might have heard of this term, “long-hauler,” or perhaps “long COVID” to refer to someone who contract COVID-19 but experience symptoms for many weeks or months. While these terms are used frequently, many who are experiencing these symptoms are seeking a NEW medical term to describe their unique and ongoing complications.

In a major step forward for scientific and medical discussion around this issue, a National Institutes of Health meeting last week brought together a broad group of researchers, physicians, public health professionals, and patients to share resources and the latest information. It was covered in an article from the New York Times.

As part of this meeting, the Chief Medical Officer of the CDC’s COVID-19 response, Dr. John Brooks, estimated the prevalence of these symptoms could impact “on the order of tens of thousands in the United States and possibly hundreds of thousands.”

While there are some groups of clinicians working to treat these patients at major medical centers, it is clear that more needs to be done to understand and better treat them. The World Health Organization announced a new initiative to gather data on COVID survivors with long-term symptoms, and they are already planning another meeting of experts in this area.

This international action is promising, but we know there are so many folks out there suffering from long-term symptoms right now, from “brain fog” to chronic fatigue to weakened heart or lung function. It is so important to recognize that many people who have “recovered” from COVID-19 may be facing weeks or months of debilitating symptoms and hold space for these folks in our discussions about the virus.

If you find yourself in this difficult situation, please know we see you and stand with you. We’ve written about these challenging symptoms before and have included some links below around how patients with long-term COVID-19 symptoms have organized themselves and found support online. We hope that this focused effort can help to bring some answers and new strategies to help you cope in the weeks and months ahead.

Stay safe, stay sane,
Those Nerdy Girls

Overview of “long-haulers” from the Journal of the American Medical Association (JAMA)

Dear Pandemic post on the prevalence of “long-haulers” (August 2020)

Dear Pandemic Nerdy Guest post on a personal story from someone dealing with long-term COVID-19 symptoms (July 2020)

More info on online support groups:

Body Politic

MIT Technology Review

Link to original FB post